Beyond tokenism: Lived experience in mental health research

Jo Evans is a lived experience researcher at King’s College London’s Institute of Psychiatry, Psychology and Neuroscience, in Camberwell. In recent years, she has been studying for a PhD. Sally Strange is a member of the Service User Advisory Group (SUAG), based at NIHR Maudsley Biomedical Research Centre (BRC), made up of mental health service users who meet regularly to review and give feedback on research studies. 

They were interviewed by ARC South London’s involvement coordinator, Savi Hensman, at our recent Knowledge Exchange, where a poster was displayed sharing findings from a study led by Jo, looking at what issues people with lived experience prioritise when reviewing mental health research. 

Jo Evans and Sally Strange at ARC South London's recent Knowledge Exchange Event

Savi: Could you start by saying a bit about the research in your PhD?

Jo:  I conducted a systematic review, which is a comprehensive summary of all the relevant studies on a topic, looking at the barriers and facilitators of PPI in mental health research. I looked specifically at how PPI operates in universities because there are a specific set of constraints that you might not get in other research settings.

I think power dynamics and hierarchical structures are the biggest barriers. Research is also so structured – from writing a research proposal to get funding and then going through ethics committees. Everything is on a very tight schedule, with fixed procedures. There are barriers around accessibility and diversity and there isn’t the flexibility that you need to do patient involvement properly.

Sally: Some researchers can be a bit disrespectful and dismissive of our expertise, because it’s not something tangible like degrees or academic credentials.

Savi: Can you say a little bit more about the Service User Advisory Group?

Sally: I’ve been a member since 2011. It’s a group of service users. It’s not that diverse at the moment - generally older, white women - but the expertise, knowledge, and understanding of research in mental health is fantastic.

I was unwell for a long time, marginalised as a result, and I viewed those years as wasted. But now I can channel that experience into something positive and useful, which is really important and very good for healing. Not so much when it’s tokenistic – it can be retraumatising. But done properly, it’s fantastically rewarding.

I have noticed within co-production and involvement within local trusts, health and social care more widely that things seem very retrograde. There are small pockets of good practice, whereas they used to be more widespread, even if tokenistic. It was interesting to explore that in more detail and to see that that aligned within the research world as much as it does within service provision.

Savi: Do you have a sense of why that might be happening?

Sally: Part of it is since austerity and budget cuts. One example was when National Insurance contributions changed last year – the first role to be axed in a service where I previously worked was the co-production lead. Frontline services are firefighting constantly, so embedding PPI is difficult. Budget deficits mean fewer service users are consulted, and often, they are the same people who do not challenge the status quo. The trust can claim there has been service user involvement, but it is tokenistic. As aforementioned, pockets of good practice exist but are scarce.

Jo: Funding for PPI is a big issue. In one of my PhD studies, I interviewed members of two lived experience research advisory groups and there’s a perception that less funding is sent our way because patient involvement is valued less.

Savi: Can you say a bit about your experiences and the journey that led you to the research you’re doing now?

Jo: When I finished my master’s degree, I saw a research role advertised where lived experience of mental ill health was a desirable criteria. It was the first time I’d seen that experience valued, rather than hidden. I started working in the Service User Research Enterprise at King’s College London and learnt the ropes about user involvement.

I’ve been running the SUAG for a long time and as a lived experience researcher, doing a PhD to explore user involvement in research in depth is fascinating.

Savi: Can you tell me more about your PhD?

Jo: I’m interested in finding out overall how PPI affects the quality of mental health research. As well as the systematic review, I’ve been looking at the best ways to run lived experience advisory groups, and also, how members in those groups want research to improve. 

Researchers often talk about PPI impact in terms of increasing recruitment or improving dissemination, but what advisory groups seem to be most interested in is how taking part in research affects participants. 

Thankfully, we’ve moved on from a time where participants were considered ‘subjects’.  Improving participants’ experiences and making research more accessible and diverse will have the knock-on effect of improving research outcomes. The beauty of including lived experience is putting that voice at the centre of research. 

Savi: What are you working on at the moment?

Jo: I will soon be interviewing lived experience researchers, like myself, about their experiences. I’m especially interested in exploring the extra emotional load and dual identity, i.e., service user and researcher, that you can carry when you do that kind of job. 

Savi: What could universities or research bodies do to make the space more hospitable, friendly and respectful for lived experience researchers and service users?

Jo: Flexibility and respect are key. Although much rarer these days, there can still be an ‘us and them’ attitude from some clinicians and researchers. We are all human beings of equal value and there needs to be mutual respect. Making research more accessible and flexible will help many more people become involved, either as participants or in PPI. 

Read the full paper: Facilitators of and barriers to patient and public involvement in mental health research within university settings